A quick overview of what I took away from the conference is sobering.
Health care costs will remain high for many years while we
institutionalize measures intended to reduce them. Patients will still
have trouble getting their records in electronic form to a different
doctor (much less access it themselves). And quality control will make
slow headway against the reluctance of doctors to share data on
treatment outcomes.

Still, I have to give the optimists their due, and chief among the
optimists is Richard Shoup, director of the Massachusetts eHealth Institute and one
of the conference’s key organizers. He points out that the quality
control measures emerging at the federal level (the “meaningful use”
criteria for electronic health records) meshes excellently with both
the principles and the timing legislated in Section
305 in the Massachusetts health care bill. Massachusetts has a
long history of health care IT deployment and of collaboration to
improve quality. “All stakeholders are at the table,” he says, and the
Massachusetts eHealth Institute recently floated a statewide plan for
implementing health care IT.

A conference fraught with political meaning

There was no doubt that politicians high up in the federal and
Massachusetts governments respected the significance of this
conference, which was also called the Governors National Conference
(no missing apostrophe here; the conference really did draw
representatives from many governors). Attendees included Massachusetts
governor Deval Patrick (who came straight from the airport to speak),
Senate president Therese Murray, US Surgeon General Regina Benjamin,
and health care national coordinator David Blumenthal. I haven’t even
mentioned the many other scheduled speakers who could not attend for
one reason or another.

As Governor Patrick indicated, Massachusetts is an excellent locale
for this conference. Besides the high concentration of medical
institutions that attract patients from around the world, and a decent
number of innovative research facilities, we are leaders in electronic
physician order entry and other aspects of health care IT.

I wondered, though, why no venue for this conference could be found in
the Longwood medical area. It would require handling the crowds
differently, but perhaps the main drawback is that Longwood would
swamp the out-of-towners in attendees from local institutions. But
instead, we were located in the new conference center area of Boston,
a place devoid of signs of life even though it’s only a fifteen-minute
walk from the bustling financial district.

The conference met the needs of both the state and federal
administrations. Patrick hit on three major topics on many people’s
minds: adding jobs, lowering health care premiums for small
businesses, and reducing the burden of health care in local
governments.

The pressures at the state level are out in full view. A recent flap
frightened the health care industry when insurers proposed annual
insurance policy increases of up to 22% and the administration slapped
them down. Although an annual 22% raise is clearly unsustainable,
imposing arbitrary limits (known as capitation) usually leads to
equally arbitrary denials of care instead of the creative fine-tuning
required to intelligently eliminate waste. I noted today that Paul
Tang, who is responsible for defining meaningful use for the federal
stimulus bill, says that to improve quality, the health care system
has to move from fee-for-service to paying for outcomes, but that we
don’t yet know how to do make such a major change.

As mentioned earlier, the Massachusetts health care bill as well as
the federal recovery and health care bills include ways to collect
data, analyze it, and disseminate results meant to raise quality while
lowering costs. I have to say that I’ll believe it when I see it,
because “doing the right thing” (as David Blumenthal called the
implementation of electronic health records) has to fight barriers put
up consciously or unconsciously by medical institutions, individual
doctors, and electronic health record vendors.

Nationally, both the stimulus package and the health care bill
stipulate very ambitious goals and extremely accelerated
schedules–and still, many people worry that the incentives aren’t
strong enough to make them come to pass.

David Blumenthal lays out the stimulus package

The Department of Health and Human Services, to administer the
billions of dollars provided in the stimulus package and the demands
on health care providers that may dwarf that appropriation, set up the
Office of the National Coordinator with the task of making and
administering regulations. David Blumenthal came from Boston back to
Washington to take on the job of National Coordinator, and
practitioners in health care now hang on his every word.

Under such circumstances, one has to look beyond the official aspects
of Blumenthal’s keynote and look at particular inflections or
emphases. Most telling to me was his metaphor of putting heath care
providers on an escalator. The point was that no matter what problems
they encounter, they should keep moving. It’s OK to start slow (he
spoke of making the first step low enough) as long as the institution
keeps adding functions along the sequence specified in the ONC
documents.

Given the extensive goals in using electronic records, sharing data
with relevant agencies, and improving clinical care, Blumenthal made
some statements one could see as defending the initiatives. He pointed
out that when the goals were circulated for public comment, many
people questioned the ambitiousness or timing, but hardly anybody
challenged the direction they were taking or the value of the goals.

He did admit some of the barriers we are collectively facing:

The unmatched diversity this country presents in geography,
demographics, income and educational levels, political philosophies,
etc.

The risk of holding back innovation. As standards are specified in
more detail, they increase the chance that conforming implementations
will interoperate, but also the chance that future advances in a field
will be hard to reflect in product improvements. (John Halamka, CIO of
Harvard Medical School and an advisor to the federal government on
implementing health care policy, issued a similar warning on his panel
the next day.)

Resilient problems with privacy. It’s worth mentioning, in this
regard, a study cited by a lawyer on a a later panel, David Szabo.
Fears of privacy hold back many people from using personal health
records, and are cited even by a large percentage of people who use
them. Only 4% of respondents trusted HIPAA to protect them. But many
say they would start using personal health records if privacy laws
were improved.

The high-level priorities cited by Blumenthal were to help small and
rural providers who have few resources (the task of Regional Extension
Centers, a new institution in health care created by the stimulus
bill) to get data in the hands of patients, and to “make electronic
systems so easy to use that doctors can’t wait to turn them on in the
morning.” I’ll return to this sunny notion later.

Patient-centered care

As I claimed in an
earlier blog, the revolution that will really crack open the
electronic health record field is the need to share data with and
among patients. The same point was raised today by Paul Tang.

One of the barriers to giving data to patients is that, frankly, it’s
not in a form they can use. Current records are fashioned more toward
insurance claims than clinical needs. They can be confusing and
positively frightening to someone who doesn’t understand the peculiar
circumstances that drive the entries. Doctors are consequently
reluctant to open current records to patients. Barbra Rabson also said
that this dominance of billing data makes it hard to collect useful
data for quality control, but that it will be several years before
doctors provide the clinical data that will provide a better basis for
analysis.

Themes that came up throughout the conference suggested that
improvements in health require patient education. Some speakers
objected to using the term “patient” because that already implies
ill-health and sets up a situation where the professional health
provider is in control.

John Halamka said that the recently passed federal health care bill
requires health care systems to make it possible for all patients to
get electronic access to their data.

How can we get patients to use this power? They need to understand,
first of all, the benefits of having access to their data. John Moore,
who promotes patient-centered care at Chilmark Research, said that
for many people this will begin at the office, because some companies
require employees to take some responsibility for managing their own
insurance. Patient records may become more widely used as patients
find value in them far beyond tracking their treatment: to order
refills of medicine, make follow-up appointments, and so on.

Next, patients have to learn the value of adding to that data, and how
to do so. (Another problem with patient-centered care is that some
patients deliberately or mistakenly enter incorrect information or
fail to record important events.) As US Surgeon General Regina
Benjamin pointed out in a teleconferenced talk, we have to design a
patient-centered system that can be used even by illiterate patients,
who are quite common in our country and who need perhaps even more
assistance than the people who can read this blog.

With all these practices in place, patients can turn to comprehending
the information they get back and using it to improve the quality of
their lives. One doctor even pushed to pay patients for complying with
treatment plans, to put some responsibility for outcomes on the
patient.

Girish Kumar Navani, CEO of the eClinicalWorks health record vendor,
mentioned that involving patients in their care provides a powerful
motivation to expand access to high-bandwidth Internet.

Privacy came up in this talk, as it did in nearly every one. David
Szabo reassured us that there are more legal protections in place than
we tend to admit. Many patient record sites post privacy policies. The
FTC, and many state attorneys general, vigorously these policies. What
Szabo did not address–because, I suppose, it fell outside legal
considerations–was the risk of data breaches, which should concern us
because attacks on health care repositories are on the rise.

Data exchange

One pediatrician recounted a teeth-clenching story of a doctor who
moved his practice to another hospital and instantly lost electronic
access to all his records. Any patient who wants to stay with him will
have to obtain records in printed form and have them re-entered at the
new hospital. This frustrating scenario gets repeated at every level
of the national health system as systems trap data in proprietary
formats.

Several members of the ONC have boasted how their specifications for
electronic records and health information exchanges say nothing about
architecture, being “technology neutral.” One can interpret this as
modest caution, but could we also see in it a veiled plea for help, an
acknowledgment that current standards and protocols aren’t up to the
task?

While many people criticize the vendors of electronic health systems
for incompatibility, Micky Tripathi, president of the Massachusetts
eHealth Collaborative, said that doctors are more to blame. The
doctors have assigned no importance to sharing data with other doctors
or with responsible agencies, and just demand electronic systems that
allow them to continue with their old workflows and require the least
possible change in behavior. One doctor in a break-out session
reported that doctors use the systems inconsistently or enter data in
unstructured comments instead of fields designated for that data, so
that automatic searching and aggregation of data becomes impossible.

Tripathi pointed out that standards in themselves don’t get people to
communicate. The history in every field is that people start to feel a
burning need to communicate; systems and standards then emerge from
that. The very early days of telephony resembled today’s health
information exchanges: you needed a separate phone and a
point-to-point line for each person you wanted to talk to. Even in
1901, the United States had 2,811 independent phone networks.
(Tripathi didn’t point out that it took heavy-handed government
mandates to bring that number down to one, and that this AT&T
network eventually became a bottleneck–if not a chokepoint–for
innovation.) His main point remains valid: most systems start out
cumbersome and expensive before best practices and standards help them
converge on elegant solutions.

Along those lines, a commenter in one forum praised the New England
hospital network, NEHEN, and claimed that it started before
applications were available, but generated innovative applications.
J. Marc Overhage, a leader in the use of electronic records for
clinical decision support, added a cute reference to McDonald’s, which
waits for a highway to be built before putting a restaurant at the
interchange.

Daniel Nigrin, CIO of Children’s Hospital, also praised NEHEN but
reminded us it was designed only for doctors, not patients.

I talked to managers at Coping
Systems, a firm that helps hospitals assess their quality of care
by analyzing statistics and presenting them in visual displays. The
biggest barrier Coping Systems face is the willingness of hospitals to
share data. Patient data must be anonymized, of course, but sometimes
hospitals won’t share data about quality of care unless the name of
the institution is removed. Even by looking at their own data in
isolation, though, a hospital or an individual doctor can discover
insights that change treatment. They can check the expected versus
actual outcomes for individual doctors, for a doctor working with a
particular nurse, for a particular time of the day, etc.

Tang mentioned a simple example of how public health could be improved
by data collection. During last year’s rush to provide H1N1 flu
vaccines to the most critical people, the government divided the
limited supplies up geographically. Some areas with high
concentrations of vulnerable people were severely constrained, and if
we had data about the locations of people who needed the vaccine, we
could have distributed it on a much fairer basis.

John Halamka, while acknowledging that many current standards for
electronic records are adequate for the task, called for better
standards to classify patients and treatments. Right now, for
instance, it’s hard to define who is diabetic, which makes it hard to
compare statistics about the treatment of diabetics by different
doctors. A recent ONC meeting, covered in another
Radar post, discussed standards for health IT.

Halamka said that electronic records, for which he is a strong
advocate, will catch on when doctors realize they facilitate new
activities that the doctors could never do before. In this way Halamka
fleshed out and energized Blumenthal’s dream of “electronic systems so
easy to use that doctors can’t wait to turn them on in the morning.”
Whether this involves improvements to public health or something more
closely aligned to doctors’ day-to-day practices, good planning will
help doctors, patients, and researchers all move toward a brighter
health care future.

Federal funding may be encouraging a move toward EHR, but there’s more to it than just installing systems. How can healthcare data pooling lead to a better system? More at http://www.healthcaretownhall.com/?p=2193

Stephen Stegner

Healthcare reform will only be achievable if the benefits of the new system outweight the challenges. Healthcare prividers need to embrace the new normal in delivering services. Without the buyin from service providers, this is doomed to become more combersome than the current system. The secondary challenge will be to appropriately reward the innovators in the industry to continue to invent and bring to market new products that extend the quality of life. Device comapnies and drug companies put millions of dollars into R&D, they must be justly compensated, unless our government believes they are the answer to radical innovation.